If you follow me on Twitter you may have seen this elusive tweet earlier this week:
You probably wondered what was going on. So did I. Before I fill y'all in on all the details I'm going to back it up a bit and go from the beginning of this chapter. . .
About two months I officially finished the round of prednisone (a steroid prescribed to regulate my kidney function) and was overjoyed at that. It meant more hair would stay on my head than on my brush. It meant the end of middle school breakouts. It meant my bones would be as brittle and could finally rebuild themselves. I was stoked and remained stoked for the next few weeks. I went to my general physician for blood work in between visits with my nephrologist and got the go ahead to proceed with life as normal.
This past Monday I visited the nephrologist and everything looked good. There was no visible swelling, my previous labs showed normal kidney function, and I was feeling great. She told me not to come back for 6 months and I practically danced out of the door with elation. On Wednesday I started noticing I was a little short of breath. Nothing major, but still annoying. I also noticed myself blacking out a bit when I stood up, but I figured it was the heat and I just needed to stand up slower. Then when David and I tried to go on a walk that evening, I made it to the end of the street before I thought I was going to pass out. It felt much like the times I actually did pass out when I was first diagnosed. I ran through the symptoms with The Momma (and my personal RN, everyone should have one;-) ) who suggested I take it easy and keep an eye on things. By Thursday morning the symptoms had worsened and
*TMI ALERT* my urine looked like beer foam (lovely, right?), a key sign of minimal change disease. Oof.
I quickly called Momma and scheduled labs. Forty minutes, a lab stick, and a urine sample later we had our answer. My kidneys were excreting protein again. It was around a level 100 this time whereas last time when we caught it the level was upwards of 300. The good news is the protein levels in my blood were stable. It seems like we caught it before it could wreck havoc on my body and cause another 25lb weight gain-Thank God! The bad news is it was back.
The general physician contacted my nephrologist who called me with instructions for treatment. Apparently the chance of relapse is 50%. She was hoping I would be in the other 50% since I was young, healthy (at least I was prior to this mess), and had responded well to the steroids the first time around. Unfortunately I was part of the other 50% that seems to relapse. She placed me back on the prednisone with a starting dose of 60mg a day for four weeks with plans to reevaluate after that.
Blah. That's how I feel about this right now. I'm
very grateful to have caught it early this time around, but super bummed it came back. While the prednisone helps my kidneys it wears on my body in so many other ways part of me wonders if it does more harm than good. I keep trying to remind myself of the good things that the steroids can bring like more energy and faster hair growth, and try to forget the bad.
If you're the praying type, we would really appreciate your prayers. What can you pray for? Prayers for continued healing, prayers to use this diagnosis as a tool of ministries by reaching other sick individuals, and prayers for patience with and trust in God's plan would all be greatly appreciated. I shall keep y'all posted as I learn more, but until then I'll be the girl eating pounds of bacon in between benching my triple my weight. A girl's gotta take advantage of things when she can;-)
(New to the blog and totally lost as to what I am talking about?? Here are a few posts to fill you in: here, here, here, here, and here)
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